Hi, I have been in situations where I've cared for someone who is too needy and have learned to set better boundaries with these types of people. But I am now having trouble knowing how to care for family members who are completely averse to accepting any kind of help or care. They are fiercely independent to their own detriment and hate the idea of becoming dependent. In some ways, I think they prefer death to losing independence or feeling like they are a burden on someone else. In fact they've told me they prefer suicide over being cared for even though they have lost many physical functions and mobility. Instead of asking for help, they just eat unhealthy frozen tv dinners and don't bathe very often because they've lost the ability to cook and chop food due to a wrist break and acute arthritis. They think they are keeping their dignity by doing everything on their own, but they're actually living in a more undignified way because they refuse to ask for/accept help. What are some ways that I might be able to get someone like this to accept care and not feel like they will be a burden?
Has anyone else had this kind of experience?
It matters to some people. Some people are extremely modest. Some don’t want to burden family members or they are embarrassed in front of family.
Others want family members to do it all and don’t want a stranger to help.
I remember one poster who has since left this site saying that she and her sisters told their mom, who was becoming frail and less able to care for herself, that one of ther sisters was having financial difficulties and would greatly benefit if mom moved in with her and paid rent. The mom, very independent, saw this as a way to "pay her own way" and help her daughter out.
The financial distress was fiction. But the sisters knew their mom well enough to craft a scenario that would preserve their mom's dignity and get her needs net.
If family doesn't have the will or the means to force change then the trickery Barb mentions may be helpful - people have told a loved one that medicare requires an annual check up in order to get them to the doctor, or that banks are insisting that everyone over 80 appoint a POA, or that in home services are covered under insurance... whatever works to address the need at hand.
There are healthy frozen dinners and side dishes, Meals on Wheels offers 5 good meals a week, many groceries offer deli options (including chopped vegetables), and grocery pickup orders are a wonderful option for someone without the energy or mobility to select complete grocery orders. The older couple down the street give me a call with their base grocery order (cereal, butter, canned rolls and biscuits, muffin mixes, sugar, coffee, canned goods, toilet paper, laundry soap, etc) and I create a grocery pickup order for them and schedule a mid morning pickup. They go to the store a few minutes before the pickup window and shop for produce and bakery items, then pickup the order and head home. They use a small wagon to get items needing quick put away into the house. The guy that delivers their Meals on Wheels carries the rest of their groceries into the house and places them on the kitchen table. They keep their basic housework up but have a cleaning lady in one day every 3 months to deep clean.
Maybe this senior couple would be better served in an IL/AL community but they want to remain in their home as long as they are both living. They plan for the survivor to move into an AL. Because I invited this couple to a holiday meal, they saw Mom's bath transfer chair and hand held shower and asked where they could find/buy them. They saw a story on the local TV station about grocery pickup and asked me how they could use the service.
With my own parents, I used a "on trial" method to get some upgrades into their home - like a ceiling fan for an anniversary present with a promise to take it back down if they didn't like it.
I have arthritis in my hands too so I have a lot of "opening" aids and some lighter cookware for daily use. I have adapted my chopping/dicing technique to placing the heel of my non-dominate hand on the end of the knife blade and applying a lot of the cutting pressure from there. When cutting potatoes for soup, I will often cooking them a bit in the microwave to soften them before dicing. So reading about OT techniques or having a few in home OT sessions focused on difficult tasks can help a lot.
People who are determined to maintain their independence and/or age in place are more likely to appreciate tools and methods to _help_ them take care of themselves than actual help from others. They may prefer a light vacuum broom to someone sweeping the floors. It may be a different kind of dignity than you would choose for them, but it's still their choice. Having a "if they were only not so stubborn and would do things my way" attitude limits your ability to explore around the edges of what they might actually accept. To paraphrase a bit, if only you are not so stubborn about there being one right dignified way then maybe you could find some other workable solutions. :-)
And you couldn't be more correct with your reply! They are much more likely to rely on helping tools, but still have trouble adjusting to tools made specifically for 'old people' - won't use a walker or a cane even though they have fallen and ended up in a nursing home for a recovery period. It's just like you say though - they are willing to depend on some tools for assistance, but would never dream of depending on a human being. You are very perceptive about saying I am imposing my views about dignity onto them, and I need to make sure to remember they are the authors of their own life, not me. But I still feel like their shame around feeling like a burden couldn't be more inaccurate. One of the greatest things about being in a relationship is being there with that person through the good and the bad and the suffering. To cut me out of their suffering isn't just isolating them - it's isolating for me as well, and I feel sad that I can't experience that part of our relationship. But I love all of the strategies that you've suggested and am very grateful for your reply.
Do you have access to their doctor? Can you accompany them to the doctor and share your concerns? Are you the POA and HCPOA? I might consult with an Elder Law attorney to see what your options are. At least you can find out what your options are to get them help, if it reaches a crisis. I have noticed that with some of the seniors who resist help despite needing it desperately, they end up in a nursing home with injuries or ailments that might have been avoided if they had accepted help earlier. That's one thing about seniors. It seems that many REFUSE any advice and refuse to use good judgment. It's sad and stressful.
A Social Worker told me: 1. Warn of the dangers 2. Offer suggestions 3. Let them choose. 4. They will wear the consequences. *This is if they DO have capacity*
But if there is real concern over capacity, evaluation may be needed. To get that, unfortunately you may have to wait for a crises & then involve professionals ie join the *waiting for a fall* club.
IF you can get the OK for an aged assessment service through the door if may open the way? It can be suggested this will keep THEM in charge, KEEPING them independent by being the Chief of their Village helpers. (IMO if they cannot run their village - time for AL)
A friend's folks hid all the hoarding in one room & put on their best "Oh we're just fine" show for the aged assess team. 3 years of fall-hospital-rehab-respite-home-fall cycle for that couple. Argghh! She says she might set the toaster on fire & call the fire brigade as a 'concerned neighbour' to literally smoke them out!
I have often used the analogy of a toddler to make elders understand. A toddler wants very much to be totally independent, but their bodies and minds are not capable of this. So, family members assist them, but allow them to do as much as safely possible on their own. It's exactly the same situation at the other end of life.
my children , an outing with them helping get my husband out , or just staying with him while I go to the Dr or Dentist for myself is never refused now . I think when the time comes for more help I may balk at first , which I think as human beings we all hate getting to that point , but will realize I make their lives tougher by being stubborn . Please everyone , you will be in our shoes faster than you know and will aggravate your younger loved ones too . Do not talk down to us . Reason with us rationally , give us time to digest your opinions on how to help us and we may surprise you .
Good advice!
My mom lived in a different state from me and when I visited her, she did not want me to do anything for her and she believed she was able to take care of herself. A cousin of mine who had difficulties with her mom told me my mom would eventually crash. My cousin was right, my mom reached a stage where she crashed where she could no longer handle her basic needs and at that point I was able to move her to into my home. This may not be an option for you. Since your family members have lost a lot of their physical mobility and are no longer focusing on their hygiene this sounds like a point where you should be able to step in to make the best decisions for them. Remember to monitor your stress and you can only do the best you can do.
My own mother was not speaking up about living alone. The sticking point making me leave my state 7 STATES AWAY FROM HER was blood pressure of 60 over 40. Okay - mom - no dice! I have to move in!